Technology Narrows the Gap

Thirty years ago, with computers on the rise, and a fictional bionic man and woman entertaining us on television, electronic technology presented a world full of endless possibilities.

In the 21st century, only a few people are using bionic limbs, but the world for people with disabilities has changed dramatically in every aspect of daily living.

Vast technological advances, particularly in communication and mobility, have enabled people with disabilities to be active almost everywhere, maintain relationships, and contribute to the workplace and the community.

In addition, said Elizabeth Waerzeggers, a physical therapist at the MDA clinic at St. Vincent’s Hospital in Green Bay, Wis., “Technology has helped increased life expectancy [see “Vital Functions”], and quality of life is so much better than it was 50 years ago. You’re seeing people with disabilities doing much more and doing it longer.”

Communication

Computers, e-mail, the Internet, augmentative alternative communication (AAC) devices and other electronic wonders have opened new doors to the worlds of communication and social interaction.

Tom Bush of Tucson, Ariz., who retired as MDA’s director of Online Services in 2004, said, “It’s [computer technology] allowed people who would be isolated otherwise and couldn’t conduct reasonable communication with others to communicate with everybody. They can maintain effective relationships through e-mail and the Internet, and remain active for as long as possible.”

Bush, 63, who has spinal muscular atrophy (SMA), noted that the information superhighway has enabled people with disabilities to maintain social relationships across all distances.

Christamae Zimpel, 20, of Ceres, Calif., has congenital muscular dystrophy and, like many people with neuromuscular diseases, she relies on e-mail and the Internet to communicate with friends and loved ones.

Augmentative alternative communication (AAC) devices, especially those that generate speech, have transformed the face of modern communication and increased opportunities for greater social interaction.

“Communication is critical to my quality of life,” she said. “I would feel much more isolated and have less of a social life without e-mail. The Internet gives me a portal to another world.”

With severe weakness in her hands and arms, Zimpel for a time had trouble using a keyboard to send e-mails, write in her journal, write essays for her A.P. English class, or surf the Internet. After months of frustration, she now uses an on-screen keyboard, a software program that displays a virtual keyboard on the computer screen. Specially designed keyboards, mice and other input devices also give people with muscle limitations computer access.

Augmentative alternative communication (AAC) devices — high-tech machines that generate speech — have changed the face of communication for people with disabilities even more.

Karen Collins, a registered speech-language pathologist at the MDA clinic at the University of Connecticut Health Center in Farmington, pointed out that the original AAC devices were similar to typewriters. Users would type on a keyboard, and the message would appear in a small window strip.

“Today, they have touchscreens, switch capabilities and telephone capabilities,” she said. “Our technology has grown in that respect, and it’s more accessible. Once patients lose that ability to type, they need to be able to do something else to preserve communication.”

Both adults and children with disabilities benefit from AAC devices.

Students “can use AAC devices to answer questions or take tests. That is allowing them to stay in the classroom, and be independent of needing an aide,” Waerzeggers said.

Some people use integrated AAC devices for computer access to e-mail, the Internet and word processing, in addition to speaking.

Depending on the symptoms and progression of a neuromuscular disease, a user can stay in the game by using AAC technology’s speech-recognition software; head-tracking and eye-tracking input; portable, hand-held devices; or voice banking (recording phrases for playback later).

Thinking, learning and working

Besides keeping the communication channels open, computer advances help people with disabilities continue thinking, learning and working. One way is by reading books, newspapers and magazines online.

Zimpel subscribes to an online collection of digital books.

“I wouldn’t have been able to read Harry Potter or any of the other hundred books I’ve downloaded thus far [without this service],” she explained. “Reading allows me to escape to a different world and become someone else.”

In addition to virtual libraries, people can learn about current events by reading online newspapers, magazines, encyclopedias, journals and hundreds of online news sources; browsing through art collections at the Metropolitan Museum of Art in New York City or the Louvre in Paris; or virtually going anywhere in the world on the World Wide Web.

Additionally, a vast variety of software has been a godsend for writers, artists, musicians, graphic designers, engineers, architects and other artists and professionals who can use these tools more easily than hand-held ones.

As technology has advanced, the workplace has evolved, creating more jobs that aren’t physically demanding. This puts people with and without disabilities on a more equal plane in the job market. It’s also made telecommuting and self-employment realistic options.

Seated in his power wheelchair, sports reporter Matt Schuman uses his laptop computer to cover the Denver Broncos for the Greeley (Colo.) Tribune.

Matt Schuman, 42, says he wouldn’t be working if it weren’t for computer technology. Schuman, who received a diagnosis of SMA as an infant, has worked at the Greeley (Colo.) Tribune for 19 years, where he reports on local sports and the Denver Broncos.

“One of the greatest technological advances that has really helped me are laptop computers,” he said. “I can still type, but because of my limited strength and mobility in my arms, I don’t type very fast. So, I need something with keys that are easy to push.”

Schuman, a member of MDA’s National Task Force on Public Awareness, also credits software programs for allowing him to telecommute. After writing a story, he simply dials the newspaper using a modem and e-mails his stories to his editor from home or a game.

“I can send a story so much quicker now. I’m a little slower now, so it is nice to have a little extra time to write close to deadline,” Schuman explained.

Schuman estimates that he works at home 80 percent to 90 percent of the time. While he still covers games, he also writes feature stories and conducts interviews via telephone.

Working from home would have been almost impossible when he started at the Tribune in 1986 because electronic communication was rudimentary then, he said.

“Instead of me sitting at home and drawing a Social Security check and using more government funds, I’m working and paying taxes,” Schuman explained. “Technology helps everybody because the more independent someone is, the more he is helping out all of society.”

Schuman believes that speech-activated software will allow him to keep working once he can no longer type.

Vital functions

Former MDA national Board member Tedde Scharf uses a method of noninvasive ventilation called the pneumobelt, which pushes the diaphragm up for exhalation and lets it descend for inhalation.

Breathing is the basis for human life, and respiratory problems and ventilators often are realities for people with neuromuscular diseases.

Since the days of “iron lungs” several decades ago, improvements have made respiratory devices smaller, portable and more sensitive. Technology allows many choices in both invasive and noninvasive ventilation, including positive pressure devices, volume ventilators and BiPAPs to be used part-time. Some ventilators are as small as a laptop computer. And, unlike old-style vents, having a tracheostomy no longer means loss of speaking ability.

Tedde Scharf of Tempe, Ariz., who has a form of limb-girdle muscular dystrophy, has almost no voluntary muscle movement and relies on 24-hour assisted ventilation.

The retired assistant dean of student life at Arizona State University had a tracheostomy in 1988, and in 1995 after seven years of invasive ventilation, she successfully switched to a method of noninvasive ventilation.

“I now use a pulmonetic ventilator, which only weighs 12 pounds,” says Scharf, 63. She uses an unusual type of noninvasive ventilation — the pneumobelt. The device pushes her diaphragm up for exhalation and lets it descend for inhalation.

Furthermore, people with neuromuscular diseases have found technological ways to manage heart problems, including electronic cardiac pacemakers and implantable defibrillators.

Daily environment

Environmental control units (ECUs), also referred to as electronic aids to daily living (EADLs), afford users the opportunity to manage their environment independently.

“There are major advances in the control of homes — what they call smart homes. Everything can be centralized. To hit a button and have a door open, that’s a big deal,” said Nicholas Johnson, 42, of Waltham, Mass., a member of MDA’s National Task Force on Public Awareness. Johnson, a mechanical engineer, has Friedreich’s ataxia.

Activated by voice or a switch, environmental control units, or electronic aids to daily living (EADLs), enable people with disabilities to exert control over their daily environment.

Three decades ago, the first control units were a box and a switch for each light or appliance. Now, one small device, activated by voice or a switch, lets users control everything from the telephone, doors, security systems and lighting to televisions, VCRs, DVD players and radios.

Zimpel uses an ECU as her universal remote, controlling her CD player, DVD player, the television and a fan in her room. She used to rely on others to adjust the volume or change the TV channel, or had to leave her fan on all day because she couldn’t turn it off.

“It’s a simpler model but just fine for my needs,” Zimpel said. “This simple box has given me remarkable independence.”

Zimpel operates the unit with a switch that she pushes when the scanning light gets to her target.

“When you lose so many abilities such as dressing, going to the bathroom, walking, etc., every iota of independence is very precious,” she emphasized.

Some people also use AAC devices as environmental control systems. The communication devices have an infrared sensor built in so users can purchase a universal unit that will pick up the signal for each item to be controlled.

Michelle Lange, an occupational therapist for Assistive Technology Partners at the University of Colorado Health Sciences Center in Denver, explained that powerful ECUs “can make the difference in someone staying at home in an independent living situation versus going to live in a group home.” She’s a board member of RESNA (the Rehabilitation Engineering and Assistive Technology Society of North America).

Mobility

Even for those who aren’t computer literate, technology has made a tremendous difference by keeping people with disabilities mobile.

Today you can find power wheelchairs that can be driven on almost any terrain. Many are powered by the flip of a switch, and some can stand or even climb stairs.

Introduced in 2003, the iBOT Mobility System from Independence Technology has helped revolutionize the world of power wheelchairs, as it enables users to climb stairs, raise themselves up to eye level and move through various types of terrain.

Tom Bush recalls that electric wheelchairs 30 years ago didn’t have a lot of power, and they tended to be “clumsy.” The newer power chairs are faster, the batteries last longer, they’re more maneuverable, and they’re stronger.

Tiffany Paavola, an occupational therapist at the Marquette General Hospital’s Rehab Department in Michigan, said, “With a power wheelchair, they can get out into the community and be more integrated in everyday activities. And, with mobility comes more independence.”

While the computer is his lifeblood, Matt Schuman remains adamant that he wouldn’t be working today if it hadn’t been for the electric wheelchair.

“[Technology] has saved my job because I used to drive my wheelchair up and back to work all the time in the cold weather,” Schuman said.

When he started working at the Greeley Tribune in 1986, he depended on his chair to get him to and from work — rain, sleet or snow — every day.

“I don’t think I would have gotten a job at all had I not had a power wheelchair,” he explained. “I had to have some way to get back and forth to work and some way to get around at work.”

Christamae Zimpel, who has used a power wheelchair for 11 years, has a specialized chair with tilt and recline.

“Without my power wheelchair, I would be stuck in bed with no freedom,” Zimpel added.

Tedde Scharf, who has used a power wheelchair for 35 years, said that people had to sit upright in one position all the time in the old chairs. Now, Scharf appreciates that she can recline the back and raise her chair, for example, to reach the telephone.

The power wheelchair has helped to bolster the independence of children with disabilities, especially at school.

“For example, children with SMA often get tired, so the power wheelchair can help them make it through a whole school day, and it also decreases the amount of caregiver assistance,” explained Jessica Rascoll, a physical therapist at the MDA clinic at Columbia University Medical Center in New York.

Besides highly sensitive joysticks, electronics provide other wheelchair control options, including head, chin, foot, toe, knee, trunk or shoulder movements that send signals to the control box. Switches can be attached to any part of the chair, and sensors can be mounted on eyeglasses, earpieces or special headbands, allowing people to drive the chair simply by tilting their head.

Advances in both computer and wheelchair technology have opened new doors to the world of communication and mobility, presenting users with several alternatives.

A recent development is a mini-proportional joystick, which is highly sensitive and only requires small, low-force movements to control the chair.

Occupational therapist Michelle Lange also discussed another recent development — mid-wheel drive. It has two main advantages over traditional front- or rear-wheel drive: It’s easier to drive in tight spaces and holds its course better.

The technology has advanced so much that “you can have an adult-size chair that turns completely on its center that only takes 22 inches to complete a turn,” Lange said.

Transportation is another important aspect of mobility. For example, Tom Bush has an adapted van with special driving controls. The van cost $27,000, and the adaptive equipment, including the ramp and driving controls cost $36,000.

Bush operates the brake, gas and zero-effort steering with electronic hand controls. He presses buttons for the windows, turn signals, lights, etc., and his wheelchair locks in place while driving.

“All of that has only been available since the late 1980s, and it’s improved tremendously,” Bush explained.

Looking toward the future

Without a doubt, electronic technology has helped to boost self-esteem, independence and convenience for people with disabilities in every aspect of daily living.

Yet, other issues can’t be solved with a simple flick of the switch, and they keep many people from benefiting from technological solutions.

These include bureaucratic red tape; inconsistencies among the federal government, states and insurance companies over funding for assistive technology; basic biological needs; and — most significantly — the cost of these electronic wonders.

Users no longer have to rely on the traditional joystick to operate a power wheelchair. Various control options, including mini-joysticks and switches, as well as head, chin, foot, toe, knee or shoulder movements that send signals to the control box, can keep you on the move.

“There’s great state-of-the-art technology that has little ability to get to a lot of the people who could probably use it. The people who need it the most simply can’t afford it,” Bush said.

Inconsistency among the states and the federal government on support for people with disabilities is the underlying problem, he said.

“Some states have a more enlightened view,” he said. “They supply a significant amount of assistive technology for adapted vehicles and other devices to keep you employed.

“They look at it as a win-win situation. If you’re employed, you’re earning a salary, and you pay taxes. So, you are contributing value to society.”

Bush said that employers and the states must look at “what is really important for people with disabilities who want to hold a job.”

It’s vital to evaluate a person’s need for assistive technology from the time he or she wakes in the morning until the time he or she goes to bed at night. For example, specialized software at work isn’t helpful if someone doesn’t have transportation to the job.

Paavola agrees that, while smart technology has given people with disabilities a great deal of control and independence in their own homes, “insurances look at what’s medically necessary, and ECUs don’t fall into that category.”

In 2006, there are still challenges for people with disabilities that have yet to be solved by machines, electronics and computers.

Computers haven’t provided a solution for independent self-care, especially in personal areas such as bathing, toileting and dressing. Although lifts in the home have become more specialized, a person still requires assistance when getting in and out of the lift.

But, we’re getting closer to making bionics a reality for people with disabilities.

Christamae Zimpel’s vision:

“When my sister and I used to play with our wheelchair Barbies, we used to imagine that robotic arms came out of the sides of their wheelchairs.

“The arms were folded in the wheelchair under a panel, and then by toggle or voice command, they would become the person’s arms with hands controlled by the user.

“It sounds pretty far-fetched, but one hundred years ago, no one would’ve believed in technology like the Internet and e-mail.”